I feel terrible having a flare at the moment and not on any disease modyfying drugs so it a huge amount of pain grrrrr mum has had to take kids to school as I can’t drive or walk very far for that matter it is so depressing knowing I can’t fully look after my own 3 children they understand that mums not very well and at times worse than others but it still upsets me, as for the drug situation I am still in a bit of shock I guess from my hospital visit last week when they told me they were stopping all treatments as they were to dangerous and damaging for me to continue, my question now is for the last 2 years my rhumy team have been drilling into me that I need to get on to dmard drugs to stop the progression of this disease and now all of a sudden we just stop so what about the progression of the disease now??? I am so angry and let down at the moment.
Sorry to rant just needed to get that off my chest.
I know how you feel! Back in 2008 I was on Remecade while on it I felt great til one day I started spasming and couldn't stop. Admitted to hospital found an infection brought on by Remecade. I was also told to come off of Remecade and also couldn't take any drugs like it. Which meant I was put out with nothing to stop the progression. I am watching my body change everyday. I am on pain meds only, but pain meds alone doesn't work. I stay in constant pain and it's getting worse. So yes it is aggrevating feeling everyone has gven up on you. What do we do now. I am going to Vanderbilt University the end of June to get a second opinion. I can' give up and give in yet. I am praying along with alot ofothers that they can give me good news. I will be praying for you to find hope. Don't give up.
That awful it is hard to try and think what things will be like as the disease progresses I try not to dwell on it too much but it does always creep back into my mind, I hope you get some answers keep me posted.
So very sorry to hear of your problems with the meds! I am glad that you have a Mom that steps in and helps you, not everyone is as fortunate as you, and I!
If this happens to me, I will take another look at the Road Back Foundation theory that treats you with antibiotics and/or throw myself at the mercy of an acupuncturist, an Oriental one, they are the very best, they can get rid of inflammation very quickly and are master herbalists.
I know that you are hurting, but I know that with three dear little children that you will find a way! Wish that I could do more than wish you well!
Thanks sk it’s nice to know there are people who care and knowmwhatnyoumare going through I have read about the antibiotic but do not know enough info just yet I got a steroid injection yesterday so hopefully ill feel a little better soon.
I'm so sorry you have to go off the meds and can't do things for your children. I'm lucky, I guess because I didn't develop symptoms until my kids were off to college. I know for me, sometimes just venting helps. I hope there will be a new treatment that will help or there will be a time when your docs can reconsider restarting the med that worked for you. When I feel fearful and pessimistic about my future, someone will usually remind me that I just need to get through today and face tomorrow when it comes. Actually, now that I think about it, someone needed to tell me that just yesterday!
I hope the steroid injection gives you some relief and am glad your mom can help :)
I know I have been there. I have 2 young kids who understand that Mommy can't always do the things they would like with them. I have spent weekends in bed with them just popping to hug me - only to have moan in paid when they touch me, or cringe as they approach. It is a terrible feeling - the worst. Luckily, kids understand more than we give them credit for. My own are so excited when I am able to join them in an activity that they no longer expected me to. Ranting is sometimes the greatest thing ever - so let it out.
My prayers are with you both, there are brilliant scientists at work as we speak, there is always hope and the teaching University hospitals always know just what is going on. New things on the was from Canada soon, so do not give up hope!